The child in the picture is my son, Cooper. He has Down syndrome. October is National Down Syndrome Awareness month so I thought I'd share some thoughts from a proud dad. I hope and pray this helps you as you interact with all types of special needs families.
1. Do NOT feel sorry for us. Cooper is our son and we are not in the least sorry we have him. Like most families with a special needs child, we were heartbroken at first. No one wants to be chosen for this. However, through the grace of God and the love and support of family and friends, we have seen the blessing of our son. So, there is no need to feel sorry for us.
2. We don't think about Down syndrome every day. At least I don't, I'll let me wife answer for herself. We definitely think of it often, but Cooper is one of four boys. Mostly we think of stuff like making lunches, cleaning up toys, keeping them from fighting or jumping on the furniture.
3. You can bring it up. We are not bothered at all if someone asks us about Cooper or his condition. We understand that most people are somewhat curious but aren't sure how to ask. Please know you cannot offend us. We have learned the lingo, but we know you haven't so if you are interested please ask, I LOVE to talk about Coop.
4. How "severe" is Cooper's Downs? Well, that's a tricky question. There really is not a chart to measure the severity of Down syndrome. Downs is a genetic condition known as Trisomy 21 where his 21st chromosome was triplicated resulting in 47 total chromosomes instead of the typical 46. This means that every cell in Cooper is affected. Basically, either you have it or you don't. The difference in capability usually relates to the investment made in the child. More children with Downs than ever are exposed to helpful influences at an early age that helps them master what comes very naturally to a typical child...things like walking and talking. Remember, a child with Downs can do ANYTHING if they just have time and loving investment. One of the hurdles many people with Down syndrome face is additional medical challenges that require attention that takes them away from therapies, school or needed playtime.
5. How is Cooper's health? Cooper is very healthy. He was born with a blockage in his intestines that was corrected with surgery the day after he was born. Cooper has a VSD (Ventricle Septal Defect), AKA a hole in his heart. This hole has been closing on its own all of Cooper's life. The last echocardiogram indicated the hole was 75% closed. He's a little more susceptible to ear infections, but other than that, he's pretty healthy. Watching Cooper, you would think he's as active and healthy as any other child.
6. Down syndrome is visible. You will notice a difference in the shape of Cooper's eyes and head. He is also very small for his age - he will turn 5 in January (our 2-year-old is bigger than Cooper). Many people with Down syndrome have a Simian crease which is a single fold line across the palm of their hand, which indicates low muscle tone in the womb. Cooper has a Simian crease on only one hand. Cooper sticks out his tongue a lot. We're working on that. His teeth are shaped differently. His toes and fingers are all on the short, stubby side. All people with Down syndrome have some degree of mental retardation. They can learn anything, it just takes time. There are other features, but these are what you easily notice on Cooper.
7. The "Love Chromosome." Some have called the extra chromosome responsible for Downs the "love chromosome" because almost every person with Down syndrome has a unique capacity to love and show affection. I truly believe God uses people with Down syndrome to remind us of His heart of love for everyone. This has been absolutely true with Cooper. Cooper does not care if you have money, what color skin you have, how you look or what you wear, he loves everyone, especially his daddy. :)
8. Our biggest challenges right now. Currently we are trying to teach Cooper how to stop running off on his own. He just takes off and will not listen to anyone. I can't tell you how many times I've had to run at full sprint to keep him from walking right into the street! He also needs to be potty trained. Again, he can do it, it just takes a long time. Cooper has shown a stronger aptitude in his motor skills development, but his talking continues to be a mountain in his development. We have figured out how to communicate with him through his few words, grunts, pointing and signs, but talking is the most important skill he is working on now. We are grateful for his speech therapist, Liz, from http://www.brightsong.net/. She works tirelessly with us to get that boy talking!
9. What you can do? Be a fan of positive Down syndrome pages/sites/blogs, etc. Defend the honor of ALL special needs people by not using terms like, "retard" or "short-bus," and step up to correct that kind of disrespectful talk. Take a stand against the abortion of nearly 90% of children prenatally diagnosed with Downs. The world is being robbed of the joy of these children. Encourage your church to make room for special needs children and welcome them in. So many special needs families feel alone and need a church family to surround, support and embrace their child with them.
10. Bless people with Downs. Since this October is Down syndrome awareness month, I will encourage one last thing...bless them when you see them. You may have a person with Down syndrome bag your groceries, bless them with patience and even a tip. If you see a family with child who has Down syndrome in a restaurant, anonymously buy their dinner. Go out of your way to start a conversation with someone who has Down syndrome, patiently listen, welcome the hug (because it's coming) and learn something about them. Volunteer in your church or local special needs pre-school/daycare as a shadow or helper. Along the way you will be surprised at how "normal" they really are. You will no doubt end up like us, thankful to God for people like Cooper.
I would love to read any comments or stories. If you are a parent of a special needs child what would you add?
Post your comments here.